Waiting to get on the list

[rookiegirl]

Hi Everyone,

I started PD back on 10/22/07.  I sent my application end of Sept. 07.  I made a phone call to the transplant people to see if they received my papers.  They have my forms but was told it would probably be Nov by the time they process the forms.  November has come and still no news. 

How long did it take for you guys to get on the transplant list?  I'm starting to worry.  I know that I would be a great candidate, but still not on the list.  Should I keep bugging them?  I saw my Dr. last week and he knows they have my papers because they sent him an email to confirm they received it.

[angela515]

Have you done all the testing first?

After all my required tests were done, I was put on the list within weeks... love my transplant team, they are on the ball.

[rookiegirl]

No testing yet.  I was told I would have to meet with the coordinator and the surgeon.  I'm suppose to atten some class before any testing can be done.  Is this right?

[Rerun]

You have a bunch of tests.  Then you meet your "transplant team".  This is the coordinator, financial person, social worker, surgeon, etc.

People think you just go "sign-up" for a transplant!  You don't.  It is like an Olympic competition!

Good Luck

By the way.... if you smoke you won't be on the list.

[rookiegirl]

So once they receive your application, shouldn't they coordinate for me to do some testing?  I haven't even got that far.  Should I continue to call and bug them?  I don't want to be a nag.

[Romona]

If you have a good relationship with your nephrologist, maybe he can help give them a nudge. I was told at my center that the waiting time to get a eval was 1 year. My nephrologist was a great help in getting me listed. Good Luck to you!

[angela515]

You can continue to call... however, your in the very begining... its a long road.

If you're going to call to bug them, make sure you let them know you have sent your paperwork and you are trying to find out when the classes and meetings and appts with the transplant dr's and team will be scheduled.

You cannot even begin testing until you meet with your transplant doctors, because they are the one's who say what tests need to be done.. and for every patient it's different. If you do a test and something is wrong, you may have to see another dr and do another test, and so on and so on.. until your cleared by every test. Once you took your classes (which they do first) and met with everyone (which they also do first) and are good to go with them, and passed all your tests, your cleared and placed on the list.

Good luck.

[Beth36]

I agree with having a good relationship with your nephrologist.  When my mom's kidneys started to get seriously low, he called the nearest hospital that did transplants and told them to process her info ASAP.  She was there in a week and on the list as soon as she finished all the testing.  She was in the hospital for 3 days.  It turned out that she has high antibodies and the hospital she went to initially doesn't do positive crossmatch transplants so she is going to Mayo Clinic.  After testing my husband, my sister, and myself my sister is the best match and will donate to her.  They're going this week to have my sister evaluated to donate to her.  This process is long and drawn out but can be made a little easier if your nephrologist can light a fire under some butts....good luck!!!

Beth

[livecam]

How long did it take for you guys to get on the transplant list?  I'm starting to worry.  I know that I would be a great candidate, but still not on the list.  Should I keep bugging them?  I saw my Dr. last week and he knows they have my papers because they sent him an email to confirm they received it.

It took me a number of months to get listed.  The process can be frustrating because most of us want to make it happen quickly and get off dialysis as soon as possible. I started dialysis in January of 1999 but wasn't listed until the following August.  The listing process at UCLA was a sequence of steps.  First was a group meeting explaining transplantation in a broad sense before a large audience.  Step two was the evaluation meeting and examination with the head of the renal transplant department, another nephrologist, and a few others.  At that meeting and exam they are  looking at a patient's eligibility for transplant and clearly explaining the risks and benefits of transplantation.  After that there was blood work and required testing for things like tuberculosis and a treadmill cardiac stress test.  Dental health is very important prior to transplant and most patients need to get some out of the way.  After that I waited impatiently for a couple of months and one day a letter arrived stating that I had been placed on the list.

[goofynina]

I would continue to call and bug the crap out of them until they give me the info i want or need   Sometimes having a relationship with your neph does not help, i remember my neph asking ME if i was on the list, WTF?      Shouldnt he have known that on my paperwork or something?  Well, then again I did change nephs but still, you would've thought that he can find that info on my chart huh?  lol,  and with me being overweight, they wouldnt put me on the list anyways so wouldnt he have known that too?  even though i have a living donor and my donor has gone through the tests and found we were a match and everything, but then again, because of my weight, they will not operate on me  

[Laurie]

The part that took the longest for me was getting my insurance to approve the evaluation. They had to draw up a contract that they and the hospital agreed on. It took about 2 months to get the insurance approval before I could begin testing. My tests were scheduled all in one day and about a month later, I was on the list. My Neph was no help at all. He was always asking me if I was on the list yet. 

Good luck and hopefully they will contact you soon.

[paris]

The first thing I had was an orientation at the transplant center. Then they started scheduling all the tests ---months and months of tests.  But, it is all on their schedule and they run the show. I like all my co-ordinators and doctors. I know they are all working for me, but it can be frustrating waiting for the next test.  And then you have to repeat some of the tests once a year to stay currant on the list.   There are a few who seem to get through the tests quick.  Most take 6 to 9 months.  Good luck and the key word is "compliant"---keep telling them what they want to hear!    Keep making calls so they CAN'T forget you!

[oswald]

why does it take so long to get on the list ?  when i went to the hospital to gey my evaluation done, it took awhile but i had it done all in one day. in fact the coordinator told me she was listing me before i left the hospital.  is that not the way it is supposed to be ?  maybe it's because i was double listed at two hospitals and they share the medical records. 

[Sluff]

You know with the list taking so long to go through you would think they could get the ball rolling a little sooner than they do. They could always remove someone if they changed their mind or became ineligible.

[angela515]

You know with the list taking so long to go through you would think they could get the ball rolling a little sooner than they do. They could always remove someone if they changed their mind or became ineligible.

Become head of UNOS.. change some things. 

[Sluff]

You know with the list taking so long to go through you would think they could get the ball rolling a little sooner than they do. They could always remove someone if they changed their mind or became ineligible.

Become head of UNOS.. change some things. 

Hell girl, if I had my way and I was head of UNOS I would make it a mandatory rule that all IHD members get transplants first. 

[paris]

Sluff, what do we have to do to make you the one in charge?    Why not "Sluff for President"?   

It did take a lot less time to be approved at the second center. They do share all medical info, center to center, so it was basically meeting surgeons, social worker, financial co-ordinator.  It is just that initial work up that takes awhile.   I do think they need to make sure you are in the best possible condition before they put a new kidney in you.  How they explained it to me was that the tests were done,so if they did discover a problem, they could resolve it before transplanting.   Why aren't the standards the same everywhere?  Just stupid!

[stauffenberg]

Because the total number of kidneys available for transplant has been stagnant in most industrialized nations since the mid 1990s, while the number of people waiting for a transplant has been climbing exponentially, there is a constantly lengthening waiting time for a new kidney.  I strongly suspect that many transplant centers are trying to minimize the apparent size of this problem by a variety of illegitimate devices, such as denying people a spot on the waiting list for reasons which are medically indefensible, such as imagining that patients will be non-compliant with the simple regimen of pill taking required for a transplant because they could not cope with the impossible regimen of fluid restriction during dialysis.  The same is true when patients are excluded because of age, since recent studies show older patients do quite well with transplants, especially since the strength of their immune system is lower than in younger patients.  Excluding people because they are overweight is another unfair criterion, since this makes little difference to the difficulty of the surgery or the success of the transplant.

Creating unnecessary bureaucratic delays before people even get on the transplant list is yet another cheap trick to make the transplant waiting time seem shorter than it really is.

[goofynina]

Sluff, what do we have to do to make you the one in charge?    Why not "Sluff for President"?

He's got my vote 

[rookiegirl]

GREAT NEWS!!! .  I received a letter today.  They finally have me scheduled to attend a transplant session on January 8th.  According to the letter, I will meet the transplant team to discuss the priliminary.  I'm so excited. .  I hope everything goes well.

[paris]

Great news.  First step in the process.  Hope it all goes well and FAST!!

[goofynina]

Good luck Rookiegirl, that is great news, keep us posted ok 

[Sluff]

GREAT NEWS!!! .  I received a letter today.  They finally have me scheduled to attend a transplant session on January 8th.  According to the letter, I will meet the transplant team to discuss the priliminary.  I'm so excited. .  I hope everything goes well.

Outstanding News  !!!! Rookiegirl. 

[kellyt]

You have a bunch of tests.  Then you meet your "transplant team".  This is the coordinator, financial person, social worker, surgeon, etc.

People think you just go "sign-up" for a transplant!  You don't.  It is like an Olympic competition!

Good Luck

By the way.... if you smoke you won't be on the list.

Is this if you currently smoke or if you've ever smoked?   

[kellyt]

I would continue to call and bug the crap out of them until they give me the info i want or need   Sometimes having a relationship with your neph does not help, i remember my neph asking ME if i was on the list, WTF?      Shouldnt he have known that on my paperwork or something?  Well, then again I did change nephs but still, you would've thought that he can find that info on my chart huh?  lol,  and with me being overweight, they wouldnt put me on the list anyways so wouldnt he have known that too?  even though i have a living donor and my donor has gone through the tests and found we were a match and everything, but then again, because of my weight, they will not operate on me  

Goofynina, are you in the process of losing weight for a transplant?  I was told at my evaluation that I need to lose about 20 lbs.  And the holidays are just weeks away!  Arrrhg!  As soon as my arm stops hurting from my fistula I plan on hitting the gym, as well as change my diet.